CHfather

Wonderful news about the cessation!!! We've discussed splitting your injections (if they're 6mg) at another thread. Something to keep in mind at your Jefferson appointment is that there is a CH "lookalike" condition, hemicrania continua [HC], that is all-day head pain with occasional "exacerbations" into more severe pain. It doesn't seem highly likely that you have this (because I don't sense that your headaches are continuous), but maybe it's worth discussing, since there is actually a treatment for HC in taking the medication Indomethacin. HC is generally not fully responsive to oxygen or triptans. Some people have suggested that Indomethacin can also sometimes work for CH. It's a difficult medication for some people because the gastrointestinal side effects can be challenging. Of course, you are much better off if less harsh approaches, such as the D3 regimen, work for you.

Is there a reason why you don't have oxygen or a triptan?

Wish I could give you a good answer to the "why" part, and I suppose it's possible that your caffeine use was somehow keeping them at bay, but I don't think anyone knows the practical "whys" of how CH begins. I also don't know what to say about the pattern of your attacks, which is indeed unusual. As you say, your symptoms sound CHy, for sure, although 10-20 minutes is on the short side for attacks (but again, not completely unheard of). Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period? Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)? Since you're new to all this, you might take a look at this "overview" file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

There has been plenty of discussion of Dr. Shevel here, most of it quite harsh. For those who are new, here's a sample thread, with includes an extensive response from Dr. Shevel: https://clusterbusters.org/forums/topic/2898-dr-elliot-shevel/page/3/ Of course, Douglas Ward, you have no idea whether you have been "cured." We wish you well. Even considering the resistance of conventional medicine to new ideas, it does seem quite surprising, doesn't it, that only one person in the world is practicing this "cure"?

This is surely a dumb question . . . Do you mean the very top of your spine, at the back of your head, or the place at your shoulders where your neck begins? I ask because as I was imagining what you describe, I was thinking top of shoulders, in part because I was picturing this as another way to deal with all the muscle tightness around that area that CH creates. Hot or cold just as good, eh? I won't be able to try it, either, but I'm hoping someone does. I'm sorry that I'm just coming to your threads (I was away for a while). It's an awful situation. I'm sorry. I'm not going to grill you about symptoms, but I do have to join with the others who have said it doesn't sound like CH, hardly at all (neither the symptoms you have mentioned nor the resistance to pharma nor even the diagnosis). Doesn't really sound like HC, either, but (again, you don't have to respond to this -- I'm sure you're tired of it) when you say in your other thread that you tried indomethacin, it is often true that indomethacin is not tried at high enough levels for long enough to really tell if it works. I would consider trying busting, as others have suggested, if only to see if it might help, and also the vitamin D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/), which seems to help with many "headche" conditions, including CH. The Basic Busting Process 1. Take a psychedelic substance every five days until attacks are stopped. This is sometimes called “dosing.” Typically, it will take roughly three doses five days apart to stop attacks, but it could take more or it could take less. 2. The typical substances used are mushrooms containing psilocybin, LSD, or seeds that contain the ingredient LSA. All of those substances are typically effective at treating CH, but people may experience different results with different substances. Mushrooms - https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/ LSA Seeds - https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ 3. The basic idea is to take enough of the substance to effectively treat CH but make any “trip” experience as tolerable as possible. Some substances have less, or different, “trip” effects than others (seeds typically have virtually no trip associated with taking them), and people have different “trip” tolerances. 4. The right frame of mind is important for dosing. The issues in this regard are often referred to as “set and setting.” 5. No medication or other substance that might block the effectiveness of busting should be used for at least five days before any dose of psychedelics. The most typical “blocker” in this regard is triptans, such as Imitrex or Zomig, but there are others. Blockers are discussed in this file [https://clusterbusters.org/forums/topic/687-6-playing-well-together/ 6. Dosing with psychedelics can cause what are called “slapbacks.” These are CH attacks that occur at different times than a person’s typical attacks, or are more severe, or both. Usually these occur on the first and second days after a dose. Not everyone gets them. 7. Many people bust to prevent future cycles (or a recurrence if they have chronic CH). That entails dosing at regular intervals when out of cycle. People use different dosing schedules for this, from once every couple of months to once every week or two; each person has to use trial and error to find the schedule that works best for them.

I can only speak about the US here, but if you have an oxygen prescription, there many locations around the world where you can get oxygen using that same prescription (not needing a new prescription). Depending on how long you are staying in a place, you could also probably set up a system there based on welding oxygen, bringing you mask and regulator with you. If you are not doing the vitamin D3 regimen -- https://clusterbusters.org/forums/topic/1308-d3-regimen/ -- I would urge you to do that, because for many people it prevents attacks and/or cycles, and reduces the severity and duration of cycles. Toward the end of this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- several things are listed that people use to stop or reduce the severity of attacks when they don't have oxygen.

@Sbr, as far as I know, national Medicare has made O2 coverage optional for the regional Medicare offices. I don't know of a more recent policy statement (but maybe there is one). It has been my understanding that practically all of those regional offices are authorizing coverage. The legal language says, "[C]overage determinations will be made by the Medicare Administrative Contractors under section 1862(a)(1)(A) of the Social Security Act, as allowed and described in Chapter 1, Section 240.2 (Home Use of Oxygen), Subsection D, of Publication 100-03 of the NCD Manual." The Medicare Administrative Contractors [MACs] are listed here -- https://www.cms.gov/medicare/coding-billing/medicare-administrative-contractors-macs/who-are-macs -- and I suppose it might be feasible to call yours and ask.

In two big studies, more than 30% of people reported that their attacks have switched sides either between cycles or within cycles. But I'm concerned with how long your attacks go on, even the one hour for the "shorter" ones. Are you doing nothing at all to stop them -- no oxygen, no triptans, no energy beverages or other strategies????

Such a simple thing, yet it practically brings tears of happiness to my eyes.

Baclofen has been mentioned before. I did a little looking around, and it seems that dosage (based on a small 2001 study), should be 15 to 30 mg per day, in three divided doses. A report said that baclofen "is quite safe when started at a low dose and built upward." (https://www.proquest.com/openview/1b8c7ab0317bbe4c7e9eac6b49072a14/1?pq-origsite=gscholar&cbl=4402921) This one -- https://www.frontiersin.org/articles/10.3389/fpain.2023.1265540/full -- says, "The most common side effects of baclofen are dizziness, ataxia, muscle weakness, and drowsiness." A document about CH treatment in general said, "Pizotifen, levetiracetam, gabapentin, baclofen, intranasal capsaicin, and melatonin have been shown to be effective in small studies and can therefore be considered as a third-line option in refractory patients." If you do try the baclofen, please let us know how it turns out for you.

Dr. Larry Schor is a psychotherapist who has CH. He has spoken at many CB conferences and is an exceptionally good guy. I don't know whether he works with clients remotely, but it might be worthwhile to contact him and find out if he has any suggestions for you: http://www.carrolltoncounseling.com/ Yes, indeed. Take that step now, please, and let us know how it's going. There are some links in here -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ --to help persuade a doctor, but s/he should just know from looking at any standard online or printed medical reference that O2 is the #1 recommended abortive (along with injected triptans, but of course the difference in side effects is night and day). Some people here, including me, theorize that doctors' resistance to prescribing O2 is often not that they don't know about it, but (a) they don't have patients using high-flow O2 and don't know how to "manage" it; (b) they don't know how to write a prescription for O2 for CH; and/or (c) they figure Imitrex works just fine. (The prescription language is something like "Oxygen therapy for Cluster Headache: 15 minutes at 12-15 liters per minute with non-rebreather mask.") Welding O2 is a very reasonable alternative. I agree with Jeebs that some busting substances might improve mental wellbeing in physiological ways, and I would also say that oxygen has improved the mental wellbeing of many, many people with CH, taking away some of the dread that you describe. I get lost on this topic, but it's my understanding that some antidepressants might block busting and some do not. Could be wrong about that. I would suggest that you name the specific antidepressants involved and then maybe people can give some direct advice/guidance. (You can also use the search bar at the top right of every page to enter a term and see what people have said about it.)

When I first heard Jeebs use that phrase at a conference dinner, I thought he was talking about something else entirely. My face is so red! (from embarrassment, I mean)

SPLIT YOUR TREX INJECTIONS (OR GET VIALS AND SYRINGES)!!! https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Oxygen availability got limited during the pandemic, and it seems to still be that way in a lot of places. You can do what a whole lot of people with CH do and use welding oxygen, which is not restricted. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Other thoughts, with links, here (D3 regimen is very very good; know your triggers...): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Yes, that's long (which is fine), and I just scanned it and jumped at a few things. 1. You never want to be using that much Imitrex. It is virtually certain to make attacks worse and extend your cycle. Do this!!! https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. You must get oxygen!! It is the lifesaver, eliminating or significantly reducing the need for triptans. Insist with your doctor and if that doesn't work, use welding oxygen (all discussed extensively in that file I linked you to above, and the file about welding O2 in the CB Files section). 3. Your verapamil dosage is still quite low. It has to be ramped up slowly to watch out for effects on the heart. But the vitamin D3 regimen is much, much better for you than verapamil. You should just start it now, and you won't need any verapamil next time. Also linked to in my message above. If you take the D3 regimen year-round, it will be good for you and also might even prevent cycles from starting. (Also -- and I hope this is moot the next time it matters, you want immediate release verap, not extended release. I don't know why but it just works better.) (Some people get into the 900s and even over 1000 in terms of verapamil mgs/day. Nobody likes the side effects of that.) 4. it would be nice if Emgality really worked for you. Results are decidedly mixed. 5. You might read up more on busting, if it's something you would consider doing. Yes, it is astonishing how few neuros bother to do even this. You got lucky in the short run, but dosing yourself with Trex is not a workable long-term strategy. Your doc probably avoided oxygen because he has no patients who use high-flow O2, and he probably doesn't even know how to write a prescription for it. You can help him with those things from ther info here. The standard prescription reads something like "Oxygen therapy for cluster headache: 15-20 minutes at 12-15 liters per minute with non-rebreather mask." There's plenty of research on the effects of triptan overuse. A 6mg injector makes overuse almost a given. There are injectors with lower mgs (Zembrance, for example, has 3 mg), but the clinical trials for CH were done with 6, and so prescribing anything else is "off label."

I don't know the answer to your question, and will look forward to seeing whether someone does. You can buy a non-rebreather mask for under $10 -- here, for example: https://www.amazon.com/s?k=non+rebreather+oxygen+mask+adult&crid=6VTGX6NP9EKP&sprefix=nonrebre%2Caps%2C86&ref=nb_sb_ss_ts-doa-p_1_8 , or here: https://www.walmart.com/ip/1pk-Adult-Non-Rebreather-Oxygen-Mask-w-6-8Ft-Crush-Resistant-Tubing/2799117746?from=/search

Welcome, M'! This overview post might give you an idea of the kinds of things that are dicussed here, including "busting" (covered at the end of the document): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ If you are not familiar with the Vitamin D regimen, be sure to look here: https://clusterbusters.org/forums/topic/1308-d3-regimen/. In general, it is recommended that you browse around the ClusterBuster Files section for topics of significance to you. Doctors have a valuable place in treatment, and if you have found a good one that's something to be thankful for. But there is a lot that patients know that most neurologists really don't know (it is shocking, for example, how many don't prescribe oxygen, and how many overprescribe triptans), so I think you'll find good answers to any questions you might have from the great people here.

BoscoPiko Congratulations to Bosco for a much-deserved new mod role!! Moderators

Are these relevant? I can't understand them well enough to know. https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-021-02229-5 https://pubmed.ncbi.nlm.nih.gov/8682673/

Seconding Jeebs's observations: 1. You never really know about changing cycles. (But I guess I'd also mention that verapamil is one of those meds that you're supposed to taper down from when you're quitting. It doesn't sound like you did that. I don't think there's anything really known about the effects on CH of stopping abruptly, but if it has effects in other areas, I suppose that could affect CH, too. How much were you taking (and in what form: extended release or immediate release)?) 2. Most people here strongly prefer the D3 regimen over verapamil as a preventive -- more effective; better for you. https://clusterbusters.org/forums/topic/1308-d3-regimen/ 3. If you haven't already, consider the alternative treatments used by many here, which you can read about by clicking on "New Users -- Please Read Here First" in the blue banner near the top of each page.

If you are stuck without an abortive, here are some things (taken from another document) that might help: Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks. “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Several people have reported that DMT is an excellent abortive for them. You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/ Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water. Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack.

Regarding 2 and 3, it's been my understanding that OUCH-UK is very helpful in all regards. https://ouchuk.org/. It's also my understanding that ClusterBusters board member Ainslie Course is a very helpful person. She is based in Glasgow and organized a European ClusterBusters conference this year and also will be hosting one next year. I see in one post that she can be reached at ainslie@clusterbusters.org.

Everyone in the study receive a dosage (adjusted for the person's weight) that I think amounted roughly to either one gram (one group) or .5 gram (a second group). Or placebo (third group). So it wasn't a matter of greater or lesser doses, just that the level of psychedelic experience that people had with roughly equal doses was not correlated with the amount of relief they got. Another interesting finding was that people with chronic CH did better in the study than people with episodic CH. Which seems weird overall, but even more weird considering the relatively small doses. (As you may know, the study did not show a statistically significant difference in relief between people who got psilo and people who got placebo. The numbers were slightly better for people who got psilo, but not at a level of statistical significance. Dr. Schindler has said that the number of participants in the study was too small to get valid results from it.) (I suppose I might cough up the $12 or something that is costs to read the whole thing, because I have about 200 questions. One of those, probably not explained or explainable, is that the standard was the number of attacks after receiving the dose (psilo or placebo). But if people were getting slapbacks from the psilo, which you have to imagine some were, that would be more attacks than the others would get from a placebo.)

It's possible that trjonas is still lurking here, but you might have better luck sending her a PM. I think you can do that by clicking here (her handle should be in the "To" line): https://clusterbusters.org/forums/profile/27423-trjonas/ If you feel like a neurologist is all you need to keep CH under control (maybe for an oxygen prescription, for example), that's fine. If you're interested in treatment methods you might not know about (or might not be doing quite right), please read around and feel free to ask questions.

You might want to send that question in a PM to Batch (whose handle here is xxx). Click on the envelope icon at the top right of the page and put xxx into the "To" line.

'Count, we can possibly offer advice if we know more about your experience, and we would surely welcome advice from you. If you click on "New Users -- Please Read Here First" in the blue banner at the top of any page, you'll get the essence of one thing, "busting," that is often recommended here, that you might not be familiar with. Also, clicking here will take you to another set of advice, the "vitamin D regimen," that might be new to you and that has helped many hundreds of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ People here can explore these things much more with you if you want. A more general advice overview is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (The same information as the "New Users" tab material is listed at the end of this file.) It is probably pretty familiar to you, but maybe there's something new. It's all open to questions/discussion/your additional advice.